In response to the conclusion from the Subcommittee on Cardiovascular and Cerebrovascular Disease of the Secretary of Health and Human Service?s Task Force on Black and Minority Health?s that information on cardiovascular disease in American Indians is inadequate and its recommendation of epidemiologic studies of this problem, the Strong Heart Study (SHS) was initiated. For the past 30+ years, the SHS, the largest epidemiologic study of cardiovascular disease in American Indians, has collected data on American Indians. In our parent grant that started at the end of 2017, which is titled Protecting Privacy and Facilitating Shared Access of Clinical and Genetic Data of Special Populations, we aim to address the challenge of making SHS data accessible to interested and qualified researchers without harming the study participants who contribute their data. We accomplish this by developing and integrating advanced technologies and scientific computing toolkits to enable shared, but protected, data access, as well as to understand the data sharing preferences of SHS participants. These tools are intended for researchers with quantitative backgrounds. Thus, in this proposed supplement, we aim to implement tools for a different audience?the participating tribal leaders and tribal community health professionals. For this audience, we aim to develop a user-friendly dashboard that adheres to the required data privacy and sharing requirements. To develop this dashboard, we will conduct focus groups with tribal leaders, tribal community health professionals, SHS participants, and tribal community members to inform the design and implementation of the dashboard. The individuals participating in the focus group discussions would be asked questions about their need for data, attitudes toward the types of data collected, and attitudes about sharing community-level data. We will design and develop the dashboard using the feedback obtained from these focus groups, and after implementation, evaluate its quality and usability with the tribal leaders and tribal community health professionals. At the end of this 1-year project, we will have a dashboard that is acceptable and useful to the tribal leaders and improves community access to SHS data.
American Indian tribes and community groups that are participating in the Strong Heart Study (SHS), the largest prospective cohort study of cardiovascular disease among the American Indian people, have expressed a desire to know about the SHS, but have also stated that they do not have enough information about the data collected to fully grasp the study. We are proposing to address this need by making the epidemiologic data available through a user-friendly dashboard that adheres to the data privacy requirements of the tribes and communities. We will develop this dashboard in collaboration with the American Indian tribal leaders and tribal community health professionals to ensure its quality and usability.
| Hindorff, Lucia A; Bonham, Vence L; Ohno-Machado, Lucila (2018) Enhancing diversity to reduce health information disparities and build an evidence base for genomic medicine. Per Med 15:403-412 |
| Ohno-Machado, Lucila; Kim, Jihoon; Gabriel, Rodney A et al. (2018) Genomics and electronic health record systems. Hum Mol Genet 27:R48-R55 |
